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in reply to: Subclinical Hyperactive? #1182989

Hi Terry,

Your numbers before the Synthroid dose do seem to put you into hyperactive territory based on your numbers. But the cause may have been simply too high a dose.

I’m not entirely sure what you are asking specifically with regards to subclinical HyperT. Is it because of the symptoms? or because your numbers where hyper?

Since you have Graves, and even after RAI you still have Graves. One hope with RAI is that once the thyroid has been radiated the antibodies calm down. But the antibodies, if they are still highly active, can be the source of some of the distress you are experiencing.

Also, the fact that some of the symptoms went away with the lowered dose but some didn’t might suggest that you may want to investigate alternatives in medication like natural discected thyroid with your doctor. NDT offers both T3 and T4 hormones, where as Synthroid is only T4. I’ve read that somewhere around 25 percent of people seem to respond better to NDT. But be aware that not all endos want to prescribe it for various reasons and it’s a bit of a political hot potate for some, so your doc may or may not be amiable to it. But it might be worth your time to do some reaserach.

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in reply to: RAI vs Surgery #1182897

Hi Gatorgirly

The doc I have to convince is my endo. I may be anticipating more problems then there will be but she and I have not seen eye to eye much during most of this, which is why I’m working on getting endo #4. My hope is that once all is said and done, I won’t need an endo. They seem to cause more distress for me then help resolve it.

I haven’t tried PTU, but may shortly. With MMI the main problems were severe joint pain and mood problems. I’ve heard that PTU may resolve the joint pain, but both MMI and PTU are CNS stimulants and I think that’s why I have such problems with MMI so am not sure that will be much different on PTU. But I would like to give it a try. However, I’m preparing for the possibility of thyroid termination as that seems to be what’s next.

I understand the risks of surgery and after having not gotten any real relief for the past two years, the idea of more waiting for my thyroid to die on it’s own time and having to deal with the ups and downs until it decides to die would make me scream. Plus, there is the cancer risk with RAI. And while the risk is small, like those with surgery, I-131 is a carcinegen. I already have a predisposition to breast cancer as my great grandmother, grand mother, mother and two aunts had cancer and I don’t need to increase the risk any more for any kind of cancer.

Not sure what you meant by “I get these, not everyone does”. Are you convinced you would have gotten those had you had surgery?

I really hope the end result will be better as you suggest, because this is miserable now.

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in reply to: RAI vs Surgery #1182895

AzGravesGuy –

Thank you so much for responding. I have been following your journey. Your words hold a lot of weight for me. I have notice since yourTT you have gotten very quiet. I took that as a very good sign that things have begun to settle for you. In fact I was going to post on your thread this very morning asking for an update. So your timing is impeccible. In the back of my mind I keep thinking about your “exhale” comment and while I’m not there yet, I really get what that must have been like.

I was diagnosed in 2012 and they had me on antithyroids up until last summer and my numbers have been sinking since. I did not do well on ATDs nor did I do well without and have felt poorly the entire time except for perhaps the two months following the ATDs when my TSH was 1.2. So my thyroids days appear to be numbered and I’m pretty ready to get this over with since there doesn’t appear to be an alternative.

The idea of getting RAI and having to wait and wonder, risk having to dose twice or ultimately having to do surgery anyway, along with a whole host of other reasons puts me into the camp of wanting surgery from the start.

The challenge will be to get my doc on board. The thing that makes me crazy is that I don’t really want either or to have to go through this at all, add to that the fear and anxiety that graves produces and it causes me much distress the idea that I have to beg/argue/fight to have a surgery I am terrified to have. This Graves is NOT as much fun as they promised.

Graves rant #2,874 finished now.

I made this into a book and didn’t mean too. I’m just really appreciative that you responded and hope things are going well for you. What med have you decided to take? Are you T4 only or no? How are the meds working out for you?

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in reply to: RAI vs Surgery #1182893

Thanks Kimberly!

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in reply to: Is there always weight gain after TT? RAI? #1182707

Tally, I’m really glad the doc is working out for you. At the time I was with him he was closing his practice, I think because of a divorce and he was not attentive. He left me in a lot of pain for almost 2 months, he underdosed the MMI which shot me hyper and it took at least a week to get a response from his office if they actually did respond. I’m guessing I just caught him in a bad year. But glad he’s doing well by you.

Thank you all for your responses!

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in reply to: Is there always weight gain after TT? RAI? #1182695

Kimberly,

thank you for your response. That is very helpful information.

Sue,

I have been unable to log in for several days but have been reading posts and have read your journey. Right now I’ve come out of remission, I have tried to take meth and I am not doing well on it. Therefore there is a chance in the near future that I am going to have to make a decision. I’m pretty much set on TT if that’s at all possible. Still trying to find a new endo so not sure when or what’s going to happen.

I thought I read something about things going pretty well and then not so well for you. Do you recall that? I’m foggy tonight and can’t find what I’m referring to.

Thanks in advance!

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in reply to: 10 Months Post TT #1182658

Kimberly wrote:

@LaurelM – Thanks for checking in – so glad to hear that you are feeling well post-TT. It’s also really helpful for our new members to read success stories from other patients!

@connypie – If you have eye involvement, that is definitely a factor in the treatment decision, as RAI can worsen the eye involvement in some patients.

For patients with mild and active eye involvement, the latest medical guidance says that RAI is considered an “acceptable” therapy, although it recommends that patients who are “high risk” should receive steroid therapy concurrently with the RAI treatment. (Smokers and patients who have extremely high T3 or antibody levels are considered “high risk”). Of course, steroids come with their *own* set of risks that should be carefully considered.

For patients with active and moderate-to-severe or sight-threatening eye involvement, the guidance says that methimazole or thyroidectomy are the preferred treatment options.

You wouldn’t happen to have those studies or what they are referring to. This is the first time I’ve heard that having RAI is safe for those with eye involvement with out an increased risk of to the eyes.

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in reply to: How to find a good doctor (not a newbie, on doctor #3) #1061059

Hiya Raspberry, again

Thanks for your response. I think that’s a really good idea, that of having one solid question to ask. I think that would get a good response. Sadly I’m just feeling overwhelmed at the process of having to begin again with yet another doctor.

I have had three doctors and each one has had their challenges. I don’t want a perfect doctor (well actually I do) but barring that, I just want one who genuinely will work with me and if they find they disagree with something I’m requesting, at least have a reasonable answer as to why. Why is that so much to ask?

Ironically the doctor I’m seeing now is younger than I am. So it’s very hard to understand why she’s “old school”. But I think she’s simply just not well versed with Graves treatment at all.

Thanks again Rasp Was a great answer!

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in reply to: What’s actually important in Graves’? #1182151

Raspberry

That’s a good question. But I have no idea what level I feel good at. When they first put me on Meth they sent me deep into hypo territory (doc 1). Doc #2 did the block and replace and said my numbers were “optimal” but I never felt well. Don’t know if it was all the medication or if it wasn’t my “optimal” level. Doc #3 dropped all meds last summer and I think for a very brief time I felt ok but that could be just being off all the meds, but I’ve spent most of that time with my TSH under 1 (.1.2 then 7 then .8 and now .53) and I’ve felt hyper for most of that. I might have been ok when it was 1.2 but I don’t think that lasted very long.

What I can say is that with the 2.5 meth I started a week or so ago, things are calming down. So I think a lot of what has been going on is that for me the levels I was at made me somewhat hyper

Nothing like hyper charged with coffee

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in reply to: What’s actually important in Graves’? #1182149

Kimberly

Thanks for this response. I’m familiar with block and replace as that’s what doctor #2 put me on and from which Doctor #3 took me off lol. I know when I was on that protocol i really felt unwell. The doctor would tell me that my numbers were good and because I was on both t4 and subsequently t3, he could tweek things very finely. I think you point is a valid one. While they are able to fully control the thyroid with B& R, the side effects from the meds, for me outweighed the benefit.

I also read the Japanese studies and from what I remember is that there was a very, very specific protocol that they followed in Japan that was multiyear. And it seemed to say that because the protocol was not followed to the letter outside of Japan the studies couldn’t be replicated.

At least I think I’m beginning to get my head around this in a very real world sense.

Thanks again for your response

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in reply to: What’s actually important in Graves’? #1182147

Raspberry – You are tremendous! Thank you. I’m still working through all of this but you have really helped. Thank you Thank you Thank you!

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in reply to: Graves’ rearing it’s ugly head again #1182069

Kimberly I agree. I am going to work with her as long as she appears to be working with me. Thanks for the resource to provide her

Raspberry, this Graves thing, as I learn everyday, is SO complicated and so many scenarios are possible. My feeling is we have to do what we have to do to survive this. I hope things calm for you very very soon

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in reply to: Graves’ rearing it’s ugly head again #1182067

Kimberly

Thank for that information. I thougth I had read that long term use is not out of question especially low dose. But I will ask her why this is her philosophy.

I get a little anxious because I think she’s really good. I know she’s really responsive, but she doesn’t seem all that interested in Antibody tests at least at this time, she has limits on atds and she considers add back therapy antiquated and I’m not sure it is. I don’t know if these are deal breakers or not, but they seem to go against some of the common themes here.

Just don’t know what to think.

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in reply to: TSH of .7 (range .3-3) #1182105

Thanks GG

That’s the one question I still don’t have a good answer for is why the TSH is falling and I’m symptomatic. I have suggested the antibodies tests but she wants to go by the Ft4 and T3. I don’t have the energy to fight of find yet another doctor. So right now I’m living in the land of denial and hoping that the every other day 2.5 mg will make a difference and just hope for, long term, my tsh decides to live between 1 and 2. One can hope…

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in reply to: Normal? Subclinical? Confused #1182114

Kimberly,

Apparently someone heard your wishes because I did get to see my doc and she did provide me with low dose meth. So thanks for wishing for me !

You said “However, I have not heard of any cases of patients being treated with meds if all 3 levels in the “normal” range.” I haven’t either and I have no idea why I’m so symptomatic when they are all normal. What’s curiuos is my TSH seem to be getting lower and lower each month and yet my T4 and T3 are behaving just fine. What in the world?!?!

I’m guessing if I wait long enough the tsh will get lower than normal, but again, everything that i have read about subclinical or mild hypo is that there often is no symptomology and I have MORE than is reasonable. WTF?!?! lol

I hate being an anomily in an already anomilous situation ….you know?

I’m actually a little calmer today than the last few days. I wonder if the 5 mg ramp up is already helping or I’m just relieved that help may be on the way. Either way, I’m so grateful that this site is here and for everything you do I have been in HUGE distress for the last few days and hopefully, now that things are moving into calmness I won’t keep hijacking this site with my distress posts

Thanks again !

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